Sunday, August 15, 2010

A normal week???

For the second time since January we had no doctors appointments this past week. I wanted to type that on Thursday but was so very afraid I would jinx myself. No doctors appointments, a full week of school, mopped floors and all the rest. Today we even went to the mall.
Now for the fine print - Yesterday when I vented (checked for air bubbles) Tomas' stomach a large amount of blood and clots came out. He has had it before but not at the quantity he had yesterday. It was 4:30 which meant if I called anyone they were going to tell me to take him to ER. So I called my husband instead. And he had a good idea! Really. He said to switch him over to J feeds for the night and let his stomach heal. I did, and this morning when I checked, his stomach acid was a beautiful clear liquid. Yes, I used "stomach acid" and "beautiful" in the same sentence. After I checked it this morning I hooked him back up to stomach feeds to see whether yesterday's blood was a fluke, or if he really can't tolerate food in his belly anymore. Tonight I checked and it was bloody again but not as bad as yesterday - more like what I've seen on past occasions. He also had way too much food in there, as if his stomach isn't moving it through. So I am going to buy us the weekend with J feeds (thank God he still has the GJ and I can switch back and forth) and on Monday I'll call GI. That means 2 appts. next week.
Which begs the question - was this past week really normal? Or has that now become the exception? Whatever it was I'll take it! Please Sir, may I have some more?

All about Tomas

When I was around 5 months pregnant an ultrasound revealed a birth defect (duodenal atresia - a blockage between the intestines and stomach) in Tomas which also meant he had a high chance of being a Down Syndrome baby. About a month before he was born I had an amnio that showed he did indeed have DS. He was born on January 16, 2009 and had his first surgery when he was 32 hours old. After that, test result after test result rolled in. In the first month my family learned he had three holes in his heart, his liver was not working, and he had Transient Myeloproliferative disorder (a type of leukemia which resolves in the first few months of life). The second month revealed laryngomalacia (a collapsing larynx), primary and secondary aspiration, and severe reflux. He was switched to tube feedings and had his second surgery to correct the reflux that was causing him to suffocate. The TMD resolved when he was 4 months old, his liver started working when he was 5 months old, and the holes in his heart have closed without intervention. After that we found out his left lung is partially collapsed, he has a stomach hernia and a liver hernia and multiple bowel hernias, and was recently diagnosed with neutropenia. He had another 2 surgeries. He is on J-tube feedings, requires oxygen support, needs to be on a pulse oximeter monitor, and has 10 specialists who follow him. He is exactly what I never knew I wanted. He has taken our family and carried all of us to a place where every smile matters, where the days breathe with possibilities, and joy reigns supreme.

"The real choice in accepting or rejecting a child with special needs is never between some imaginary perfection or imperfection. The
real choice is between love and unlove, between courage and cowardice, between trust and fear. And that’s the choice we face as a society in deciding which human lives we will treat as valuable, and which we will not. "